What is palliative care? How does it differ from hospice?

Hospice care is defined as care of patients in the last phase of an incurable disease so that they may live as fully and comfortably as possible.   Palliative care is a discipline that is devoted to achieving the best possible quality of life throughout the course of a life-threatening illness, through the relief of suffering and the control of symptoms.  In children with life-limiting illnesses, it is often difficult to predict the outcome until death is imminent.  Regardless of the actual outcome, a comprehensive palliative care program can help patients and families deal with many stressors, including fear of death, separation, pain, emotional suffering and isolation.

What do you mean by a comprehensive palliative care program?

Palliative care is provided by an interdisciplinary team, which may include physicians, nurses, social workers, chaplains, pharmacists, child life workers, counselors and others.  The unit of care is the child and the family, and the palliative/hospice services are provided in a setting that is appropriate to their needs and wishes.  Care provided focuses on enhancing quality of life and relieving physical, social, psychological and spiritual pain for the child and the family.

Does the Mariposa program accept patients around the state, or only those children being treated at UNM?

Our goal is for every terminally ill child in NM to receive comprehensive palliative care and hospice services, whether they are at UNM or in local communities around the state.  The Mariposa team provides direct patient care within a 60 mile radius of Albuquerque. For patients from other areas of NM, we work to support local hospices, primary care physicians and home health agencies in caring for the child and family, to ensure the patient receives quality end of life care and to provide support to the family both before and after the child's death.

I am not comfortable managing all the pain and symptom control for my patient when they come home. What other roles can I play in my patient's care after he or she has been placed on hospice?

While the hospice medical director will provide care for your patient, your continued involvement is extremely important.  Research shows that the vast majority of people do want information about their condition, good and bad, and that they want to hear that information from their physician.  The relationship you have developed with the patient and family will allow you to discuss sensitive end-of-life issues in a caring and personal way.  Patients and families are faced with many difficult decisions at this time, and they want to discuss these issues with someone they know and trust.

What specific things, besides pain and symptom management, can I do for my patient on hospice?

There are many ways you can help your patient and their family.   Some of these might include:

1. Oversee the care to ensure continuity and to promote quality of life as defined by the patients and family.
2. Discuss end of life goals with patient and family (including DNR, when appropriate).  Patients and families are often reluctant to bring up these issues with their specialist (for instance, their oncologist); the parents view the specialist as someone who is doing everything possible to save their child's life, and are hesitant to bring up the fact that the child may die for fear the specialist will "give up on them."
3. Facilitate communication between the parent and the child, including the child in the discussion as much as possible.  Terminally ill children are usually aware of their prognoses (even though they may hide that knowledge from the adults around them), and they feel less isolated if they can communicate their concerns.
4. Listen compassionately to the fears and concerns or the patient and family members, and answer their questions fully and respectfully.
5. Give explanations in clear, simple language, recognizing that you may have to give the same explanation several times.
6. Accept cultural and religious perspectives about illness and death which may be different from your own.
7. Acknowledge the child's and family's strengths.
8. Don't hide your own feelings to protect the family.  They will appreciate that you care.

My patient is being given palliative care.  What questions should I ask the family or patient when I visit them?

Important questions you can ask include:

1. What have the doctors told you?
2. How do you think things are going?
3. What do you expect to happen?
4. What do you hope to get out of this treatment/hospitalization?